VISITOR PHOTOS FROM MAX

Our last day in the hospital was filled with special visitors...Aunt Lisa and Cindy, a hospital friend Katie, Akiko and Souma (Ryoto's mom and brother), Kristy and Dylan and lots of doctors and nurses! I certainly am a loved lil' boy! Thanks everyone! :)

Akiko is such a wonderful and loving friend to me and Mommy. She came to see us and she gave me lots of love. Her family is very sad with the loss of their sweet baby. I think seeing me was difficult but also wonderful. Thanks Akiko for coming...and Mommy thanks you for the delicious treats and super cute baby Mariners outfits!

This is my special friend, Souma. He loves me very much and always brings me beautiful drawings! Thanks Souma! Your smile brightens the world!

That's my Aunt Lisa behind the mask! I think mommy must have warned her that I like to eat noses!

I really wanted Aunt Cindy's guest pass...you know how I love to play with "labels."

All these visitors are wearing me out, I think I'll take a quick snooze!

A QUICK PERSONAL VENT FOR MY FAMILY AND FRIENDS

We are home...home sweet home. Max and I were delighted to be discharged last night and get to sleep in our very own comfy beds. He is in a great mood today...and despite his wheezing, he is quite energetic and happy. However, with his new 24/7 drip feeding), he is quite a handful to watch. Yet another tube for him to grab and pull!!! Crazy kid! :)

I was going online to post what happened yesterday with Max's tests, etc. However, after reading an email from my soon to be ex, I am rolling my eyes and thought I would share his latest.

He started in again this morning about how he thinks this blog is just an ego trip for me. What in the world??? And it gets even worse. Some of you may remember that when we invited him to the birthday party in Wheeling last month, he denied by replying that the party was more to pump up my ego than to celebrate Max's birthday. Where does he come with this stuff???

The fact that Maxwell lived to reach his first birthday is the most amazing miracle. Yet instead of celebrating this INCREDIBLE milestone, he chose to degrade our efforts to share the joy. Wow. I have really tried (as much as possible considering the circumstances) to be civil with this man, but how can I when he says those kind of things or acts the way he does?

The only way the man knows ANYTHING about his son is through this blog. Instead of criticizing it, he should be grateful for the updates. Otherwise he wouldn't even know what Maxwell looked like or quite frankly if he was even breathing. We have communicated plenty of times about work, money, etc., but he hasn't even asked about Maxwell since last year. And I even alerted him about Max's admittance to the hospital and he still didn't even check in on him.

He is so ridiculous that it is almost humorous. But because his behavior impacts Maxwell's future, nothing about it is funny at all. Not in the slightest.

Anyway, I just had to vent for a moment on that issue. None of it is too surprising, but just still so disappointing and outrageous. How could someone be so heartless? Especially with an amazing lil' miracle like Maxwell involved???

I will definitely try and post later today about the tests, the next steps, etc. I know that is FAR more important than venting about my ex's immoral behavior, but I just had to get that off my chest first!

Thanks everyone for your calls and emails during this past week...very appreciated. Max is slowly but surely on the mend, and most importantly he has been doing his happy dance lots and lots! :)

POSSIBLE DISCHARGE???

We *might* be as discharged as early as this evening!!! :) Mommy and I are thrilled at the thought of going home! The pulmonary doc says I am still quite wheezy and not in the "best shape," but since Mom is pretty experienced at this now, I could possibly go home to get better!!! YAY!!!

I am still in "ISO," which is medical lingo for isolation because of my respirator virus. The good part is that we have a private room, but the bad part is that everyone has to wear gowns, mask and gloves. Sorry guys!!! The initial tests came back negative for RSV, etc., but they think my bug is one they cannot test for...so they are keeping me in ISO to play it safe.

Before I am even considered for discharge, I have a few tests to get done today. This morning I have an Upper GI to test my Nissen and stomach status, and this afternoon I have an Echo for my heart. Hopefully both will give us solid answers one way or the other.

If my Nissen is slipping, then we will have surgery scheduled once I am feeling better. They wouldn't feel comfortable putting me under anethesia in my current condition. Mom and the doctors will have to make a choice if I should have surgery or they could change my Gtube to be a GJ but that would require 24/7 drip feeds...yuck! So we are already leaning towards surgery...a bit risky but possibly easier on me in the long run. Tough decision though. As for my nose repair, they also want to hold off on that until I am over this hump too. Perhaps they will combine the two surgeries which would be MUCH easier on my lil' body!

Hoping, hoping, hoping we are heading back to home sweet home later!!!

Love, Mighty Max
(All the nurses, doctors and RTs are LOVING seeing me again...I have had a gazillions admirers stopping by!!! I have to say that is kinda fun!)

HOSPITAL REPORT FROM MAX

Hey everybody, I don't know what the fuss is all about around here! So what if I breathe like a maniac and I sound like I have been smoking ten packs a day for ten years. No biggee, right? :)

But seriously, overall I am doing ok. Yes medically I am not doing great, but I'm not letting that get me down and that is what is most important. I have given my mommy lots of "happy dances" to keep her in good spirits. She's a little sad that we are here again...brings back a lot of scary memories for her.

In between medical treatments and all the doctors stopping by, we have been playing and doing lots of therapy. (Have I mentioned how much progress I have been making? I'm pretty darn incredible!)

Unfortunately twice yesterday during therapy I spit up milk unexpectedly. That confused my mom and stressed her out a little. At home she has the suctioning down to a science. She pretty much sits on me to control my arms and head!!! (Doesn't sound fun, does it??? Trust me, it's not.) But here I am in the crib and there are a million more wires on me, so she can't do that as easily. She was yelling for help but no one was near...pretty stressful and frustrating but we managed.

ANYWAY, the good news is that I didn't vomit that much this morning or throughout the night. This past week, I have been "tossing the cookies" at least a few times in the morning during all my gagging and coughing. I am on continuous feeds (a lil' annoying for me and mom...yet another cord for me to get tangled up in!!!) so perhaps that is helping. That also is a sign that a lot of this could be because of my failed Nissen. That surgery will definitely not be fun. Anesthesia, the PICU, intubation...the works. Mom and I are *hoping* we don't have to resort to that.

My night was ok...I slept pretty soundly. Mommy acted as my body guard, which was great! Everyone kept wanting to poke and prod at me and some of it was not necessary. So Mom would stop everyone before they did anything. She's too funny! Her "spirit" works in my favor!!! :)

We'll see how today goes. Hopefully we work out the "kinks" in the system, and Mom will be able to relax and perhaps even sleep a bit. Gotta go, we have rounds soon and you know that Mommy loves to make her voice heard regarding me!!! :)

Thanks for the prayers...keep 'em coming!
Love, MIGHTY Maxwell

ADMITTED TO CHILDREN'S

Today we were heading to Children's for clinic visits and tests, but I had a sneaking suspicion we would be staying. His respiratory status has continued to decline in recent days with extreme wheezing, increased O2 needs, etc. Additionally his retching and vomiting has not subsided in the slightest. So I called ahead and asked for pulmonary to come and look at him.

Once they did his chest xray, he was immediately sent to the ER for several hours and then admitted overnight. They think Max will need to be here for several days due to the various issues. It feels very, very, very strange to be back here and even stranger to have such an active kiddo in a hospital bed. Much more challenging!!! His pulmonary doc was so "impressed" (his words) with his extreme wheezing that he was having the entire team listen to his lungs. Many of them were on Max's team before, and they were blown away with how big and strong he has become.

In addition to his respiratory distress, his Gtube/Nissen could be failing. They want to give him a few days with new meds on board and then they will run some tests on his Nissen. If that has indeed failed, he will require another surgery.

I will try and keep everyone posted. Should be an interesting few days...

CHILDREN'S VISIT TOMORROW

Boy, do we have a packed day tomorrow at Children's Hospital! :)

We have a gazillion appointments with the heart and lung doctors, as well as a few other specialties. Unfortunately, I think we are going to have to cancel the swallow study (again) because of his current sickness.

Hopefully we get some answers from the heart test. The last test showed that he absolutely required oxygen at nights to help with the pulmonary hypertension. The side of his heart was growing in size to compensate for the extra demands. The supplemental O2 helps with that issue. Right now he requires even further O2 because of his bug, but once that is gone, it would be nice to not "HAVE TO" have oxygen with his sats are good.

Next week we return to Children's for even more tests and the procedure/surgery for his lil' nose finally. Hopefully that is an outpatient procedure, but it might require an overnight stay if he needs to be completely sedated.

Tomorrow we are also meeting up with his favorite Respiratory Therapist (we love you Ann!!!) and the wonderful mommy and brother of Ryoto, a CHARGEr who passed away recently. We are excited to see all three of them, as well as all of Max's fan club of nurses and doctors. It has been nearly a month since we were there, and Mighty Maxwell has changed tremendously!

The next day Maxwell will have two special visitors, which will be fun! His aunts (from his father's side) Cindy and Lisa are in Seattle this week and are driving up to Bellingham to come and meet their lil' miracle nephew. These are the first people from his father's family that he will meet. I think they are pretty excited and we are too...I always love introducing him to new people because everyone immediately falls in love!!! :) Welcome Cindy and Lisa!!!

THERAPY PHOTOS

LOOK AT ME MOMMY, LOOK AT ME!!! :)

This photo is from last week (before he started feeling crummy) during one of Max's very best occupational therapy sessions!!! It was so exciting! He actually lifted his head for us without fussing about it. That's Eileen (his OT) applying pressure to his backside. A little trick of the trade in helping him develop upper body strength!

HEY LADY, JUST GIVE ME THE SPOON!

We haven't been making too much progress in the feeding department, but we keep trying slowly but surely. Unfortunately he has been having so much respiratory difficulty that we don't want to push too much with the feeding and risk further aspiration. So for right now we are focusing only on his tongue issues. Our goal is for him to close his mouth around the spoon and keep his tongue in there too. He tends to want to stick his tongue out, which certainly doesn't help with swallowing. But he just wants to play with the spoon! :)

TWO QUICKIES

Ok, is it weird that many of Max's favorite toys are medically related??? :)

Every time I give him a med, he wants the syringe and when I give him an inhaler treatment, he wants to chew on the mask. And let's not forget the cannula...it also provides great fun! Oh and the latest is pulling on the Gtube. He LOVES to do that most of all, so he absolutely has to be clothed at all times or watch out!

Notice the lil' hand holding on to the bumper? He just started doing this in his sleep and it is too cute!

*** If you notice from the number of posts today, I am doing a lot of "office work" (i.e. insurance, divorce, etc.) and it can be quite tedious. So I am looking for distractions!!! :) Soon though we must run to our equipment supply company and pharmacy because we are going to try a different nebulizer treatment for his breathing. Hope it makes a difference! His nights are pretty rough!

CONGRATULATIONS CHARGERS!

HAPPY BIRTHDAY ELLEN!!!
Ellen, a wonderful CHARGEr who we met through our online CHARGE group, recently turned 21 years old and had quite the celebration!!! They put together a video of pictures from the party for everyone to enjoy! :) Ellen is a very positive, inspiring, loving and caring young woman who we are delighted to know! Happy Birthday Ellen! You are wonderful!!!


EVAN "GRADUATES" FROM THE PICU!!!
Max's friend, Evan, finally moved to the floor this weekend after a week in the PICU. His parents were definitely not expecting this long of a hospital visit and are eager to return home. We are hoping they will be able to get some nursing help since he will be requiring more breathing support and equipment than before. Congratulations Evan, we are sooooo happy for you!!! :)

POEM FOR SPECIAL NEEDS PARENTS

This poem was posted on our CHARGE support list...thought I'd share it with some of my fellow special needs parents.

And He Gave Me To You

Ever wonder why you're the lucky one,
The one who came to be?
The oh so very lucky one,
Who was chosen to care for me?

It may not be obvious sometimes,
But you have all I need.
I need someone with patience,
I need someone who is kind.
I need someone who is strong,
And not quick to lose their mind.

I need someone who is special,
Someone very special indeed.
I need someone who will care,
Someone to care for me.

You may never know my thoughts,
You may never know my voice.
Just please be reassured,
That was not my choice.

God knew what he was doing,
When he gave me to you
He knew you could handle me,
He knew what you could do.

You see I am very special,
Someone very special indeed.
I need someone who will care,
Someone to care for me.

I know that I am not perfect,
And that I make you cry.
That was not my intent,
I'm just your little guy.

One day you will know me,
The way you want to know.
But for now I'm just me,
No matter how hard that may be.

But I am a special person,
Someone very special indeed
You'll never know how glad I am,
That God gave you to me.

You see you are not the lucky one,
The lucky one is me.

-- By Christine Quiroga

ADORABLE PHOTOS

Hello everyone, it's me...MIGHTY MAX.

Not feeling all too mighty today, but I am hanging in there. Mommy took me to the doctor's yesterday and they added another medication and increased my inhalers. Hopefully that does the trick. The visit was not fun at all though! The doctor was checking in my nose and accidentally scraped the inside, so I started bleeding. Then she went to examine my ears. I really, really do NOT like when someone touches my right ear and so I completely freaked out. Well then that ear got nicked as well and started bleeding a lot. It took my mommy a long time to calm me down after that. :(

I continue to be very congested with lots and lots of coughing and gagging and with increased O2 needs. The nights are the worse time of day for me. Fortunately we have been able to have some nursing help. There is no way mommy would be able to pull this many all nighters!

Hopefully I will on the mend in the next few days. Unfortunately I will have to miss my playgroup tomorrow. Bummed about that! And I'm not sure I will be able to attend any holiday celebrations...but there is always next year so no worries.

In the meantime, I thought you all might want to see some photos from the past few weeks. (There are a million more, so maybe we will post more tomorrow!) Don't want to brag, but I must! I am getting more and more adorable every day!!! :)

ENJOY and best wishes for a wonderful 4th of July celebration!

As everyone's favorite "funky monkey," I got lots and lots of new monkeys for my birthday! Look at how cute this one is! Thanks Ang and Cody!

Grabbing my feet is my new favorite thing! Mommy loves that I have reached this milestone...PLUS I look super cute doing it!!!

Do you want to just eat me up or what? Mommy was practically crying when she took this photo because I look so sweet! Plus, check out the meat on my bones! I am getting bigger and stronger every day!

Look at me holding my head up! WOW!!! :) This has been a long time coming, so we are very, very, very, very proud and excited!!!